HIV and Millennials: The Stigma Epidemic in the United States*

While the LGBT civil rights movement has been steadily moving forward towards greater acceptance among the straight community on things like same-sex marriage, there are still things that lag behind the march towards full equality, such things as transgender rights, safety (especially for transwomen of color), and access to culturally competent healthcare and support for those living with HIV.

HIV And Stigma

For those living with HIV in 2016, the stigma of a disease that was once a death sentence is still a problem within the GBT broader community. This is in sharp contrast to the bonding of a nascent gay communal identity in the 1970s and 1980s, as HIV/AIDS and newly found liberation brought many men together to fight for access to treatment and governmental action. This isn’t to say there was no stigma in the 1980s, but rather the community was more united than divided.

Today, the cause of fighting for a cure, vaccine, and prevention has a largely been left to the medical community to deal with and the problem of stigma has been left to activists.

The disease is still seen as defiling and a risk to greater group health and cohesion, despite it no longer being a death sentence.


HIV Is A Foreign Topic To Millennials

As we enter the 4th decade of the pandemic, HIV is a bit foreign to Millennials, as the oldest were just infants or just being born in the 1980s and in elementary school during the 1990s, we, as a group, were unconscious of the realities of sexual health and, at least for some, sexual orientation. It was during this time when the national epidemic raged and ravaged the gay community because of the lack of the powerful medication we have today.

As we grew older, the incidence rates of HIV started to decrease, thus shifting the conversation to other gay related topics began to take focus, such as gay marriage and non-discrimination policies. While discussed in the sexual health unit in my middle school science class, HIV was moved around more pressing topics of gonorrhea and birth control methods to combat national teen pregnancy rates.

HIV On The Rise In Young Populations

However, as we exited high school, and for some, college, the incidence rates of HIV infections started to trickle up. What was alarming was the fact that the newly infected were young men and a significant size were young men of color, with the CDC just publishing a report projecting that 1-in-2 young black men who have sex with men will be diagnosed with HIV some point in their lifetime. Further inspection found that there were variables in transmission that were not seen for a while, such as an increase in condomless sex and a troubling rise in crystal meth use.

HIV Overshadowed By Other “LGBT” Issues, Contributing To Stigma And Lack Of Support

With the increased visibility of the LGBT population in American culture, it stands to reason that HIV should come out of the closet as a major issue that the community should be fighting for, in addition, to fight for basic civil rights such as equal marriage and equal protection. However, HIV health has largely fell to the back of the issues. With the disease less “deadly” and the public health, medical, and governmental establishments ability to take care of the issues, allowed for other, more pressing issues to be fought for.

This contributes to the level of HIV stigma present because the Millennial generation simply has largely not known the disease as a forefront of concerns of the wider movement, nor is HIV education is not part of the sexual education experience that only a segment of the high school population receive. Ignorance is apart of stigma, especially about a disease that is no longer making national headlines. By not understanding the realities of HIV infection, empathy is stymied.

HIV And Spoiled Identity

Given that contracting HIV is considered dirty and the person now becoming a dubious citizen applies a spoiled identity marker. One of the classic sociologists, Irvine Goffman wrote a book on how people with spoiled identities use specific techniques to manage their markers through various social interactions. He showed how stigma is inherent in those identities that are in contrast of the “normals,” or white, straight, and middle class people. Those living with a spoiled identity must work around and manage stigma, sometimes grouping together, retreating from society, or rearranging their identity markers in order to strategically move through the different realities of living among “normals.”

The stigma surrounds people living with HIV is also very caught up in the American pursuit of healthy living. Scholars such as Jonathan Metzl, a medical sociologist, have uncovered that the healthy living “industrial-complex” works as a moral tracker, thus making the argument that engaging in healthy behaviors is considered to be morally correct and practices good citizenship on the part of the individual. To live with a chronic disease that is caught through “unsavory” means, is not being a good citizen.

HIV: Painful Disclosure, Painful Responses

People living with HIV have to exist in a system where revealing their status is a minefield of emotions and microaggressions. This has a real impact on the health of the individual and their partners. If embarrassed about their status, people are not as likely to reveal it until a connection has been made or even at all, despite several states criminalizing knowingly spreading HIV and not disclosing their status to their partner(s), affecting more men of color than any other group. HIV disclosure is a heated and debated topic with many activists believing it should be up to the person to decide to disclose, rather than a mandatory action.

Status disclosure is not only about revealing to sexual partners, but also disclosing to friends and family, who may or may not be supportive in the face of an HIV infection. This creates a stigmatized identity that often manifests in the fear of causal infection. It is absurd to think that one can contract HIV through kissing, sharing toilets, sharing plates and utensils, but alas all of these have played a role in a defining stigma of HIV individuals. The microaggressions of these fears cause psychological distress that builds up over time, leading to mental illness.

Lack Of HIV Eduation And Basic Understanding Of HIV

In addition to not disclosing their status, the stigma of contracting HIV and the various moral judgments that inevitably pop up during testing and treatment in the form of  questions and comments like “How did you contract it,” “Why didn’t you practice safer sex? You should know better” can lead to HIV-positive people to delay, forgo treatment, or dropout of the pipeline of care. By not pursing treatment, the individual is putting their health at risk for serious complications from various infections and other disorders due to a comprised immune system.

The San Francisco AIDS Foundation’s Strut clinic, a resource for the GBT community that provides health and wellness programs, has a program called the Positive Force. It is run by HIV-positive men for other men living with HIV where they address how to deal with stigma at the doctor’s office and topics surrounding disclosure. The Force also runs events for HIV-positive men to socialize with like-minded individuals. This is an important resource for HIV-positive men to have in order to combat the stigma that exists outside these spaces.

DDF, Grindr, And Young Gay Men

If you spent any time with a Millennial gay or bisexual man, you will likely heard about Grindr, a hookup smartphone app for gay, bisexual, and bi-curious men to find like-minded men for hookups and dates. Grindr launched in 2009 by Nearby Buddy Finder LLC. Each profile has the option for some text about what the user is looking for in a partner, which frequently demarcates racial “preference,” sexual position, and sometimes kinks. The profile also has fields for the user to input their stats, such as height, weight, age, and “tribe.”

One thing that is also present on some profiles are the acronyms, like DDF (disease, drug free), and words such as “clean” or “neg 4 neg” (HIV-negative man looking for HIV-negative partner). These descriptors, especially “clean,” can be seen as creating stigma and microaggressions around HIV, as they make HIV-positive individuals undesirable risks to the socio-sexual network of Grindr and beyond.

While DDF is more general in tone and message, I suggest that gay culture often conflates sexual transmitted infections with HIV, as it receives the most promotion from the medical and public health communities, despite their desire to address all STIs. Whether this is the case or not, the acronym is still contentious with HIV-positive men on Grindr.

The other terms are unambiguously discriminatory, however, it is “clean” that promotes more stigma than “neg 4 neg”. Clean harkens back to messages of health morality by suggesting that HIV-positive individuals are somehow dirty and unhygienic, which is deeply stigmatizing to those whom the term has been applied. This inspired HIV-positive activist Jack Mackenroth to create the HIV Shower Selfie campaign and promoted the hashtag #weareALLclean on social media, making the point that being “dirty” isn’t related to one’s HIV status.

HIV Intersects And Affects All Of Us

It is important to note that HIV isn’t just a disease that affects white, cis, middle-class gay and bisexual men who have insurance to pay for medication and other related health expenses. As the New York Times reported in 2013, the new face of the epidemic in this country is a person of color who are often living in poverty, thus are not able to access healthcare for reasons as simple as they cannot afford to take public transportation to a clinic that is not close by.

While painted as a “gay” disease, the HIV virus doesn’t discriminate and is present in the straight community. In Philadelphia, this has led to difficulty in getting people to test for HIV in the straight, religious communities of color, as the disease approaches issues that are seen as private matters or matters that transgress religious norms. By not getting tested regularly, health disparities among color, class, and sexuality become significant, because when HIV is caught too late the effectiveness of treatment is lessened and people can die from treatable disease complications.

Millennials: The Fastest-Growing HIV Positive Group?

While Millennials might be one of the fast growing groups of HIV infection, we also have the power to end the epidemic. There are many Millennials living with HIV that have become outspoken activists, such as Josh Robbins, creator of two HIV related apps, one for asking anonymous questions about HIV and other to prove an HIV-positive individual’s status, and blogger for resources like

Millennials of either status can work to prevent HIV infection through the proper use of preventive prophylaxes (male/female condoms, Truvada/PrEP, treatment as prevention, and regular testing if sexual active). In addition, those who are HIV-negative must change the way one interacts with someone living with HIV. HIV-Equal, run by World Health Clinic, is a resource dedicated to reducing HIV among the HIV-negative communities, with a multitude of slideshows with ways one can be approachable and supportive.

We must take out the stigma and misconceptions about HIV infection, meaning disseminating factual resources and not buying into miracle “cure” narratives, but also re-humanize and re-engage the fight for a cure and vaccine in the mainstream.


*This article first appeared on What Millenials Want.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s